Behcet's Disease

Join the Conversation on
Behcet's Disease
2.4K people
0 stories
266 posts
  • About Behcet's Disease
  • Explore Our Newsletters
  • What's New in Behcet's Disease

    Struggling to be validated by Drs & feeling SO fed up. Chronic, rare Autoimmune Symptoms; I know it's Behcets. Looking for specialist in CA, US.

    Short run down. Chronic strep throat as child. Tonsils removed. Allergic to strain of strep in 6th grade...almost killed me. Never regained "normal" health. On and off horrid joint pain, pain in eyes, multiple Derm diagnoses, chronic inflammation, chronic insomnia, asthma, then Arthritis, Bursitis, Depression, Anxiety, lost weight then gained over & over, pregnancy very painful and high risk. Spinal Stenosis, Sciatica, Anemia. Got pregnant again & was even worse. Thankful for 2 healthy kids, but Momma is not healthy. I'm 47 now. Labeled with Fibromyalgia but no treatment. Need to be back on pain meds but bc I stopped (MY choice), years ago Drs don't want me back on them. I have done so much research and I KNOW I have Behçet's Disease. Looking for somewhere to go in the US for the validation & proper treatment. 20+ years of struggling invisibly (until huge sores all over neck & head in May 2022). Currently on evil Prednisone, Colchicine, Mobic. Rheumatologist taking too long to have me jump through all of her hoops. Any advice appreciated 💜
    #BehcetsDisease #MomGuilt #ChronicDepression #chronicinflammation #Insomniac #Anxiety #Arthritis #Divorce #PTSD

    6 reactions 11 comments

    I'm new here!

    Hi, my name is lynnebeez. I'm here because I have a number of autoimmune diseases including Addison's Disease and Behcet's Disease and I want to share information and treatment ideas

    #MightyTogether #MenkesDisease

    See full photo

    Have you ever met anyone who lives with the same rare disease as you? What was it like?

    Living with rare disease can not only feel rare in the sense of statistics, but also in building community and finding someone to share experiences with. Finding others that relate can be hard. Have you ever met someone that shares your same rare condition? If so, what was that like for you?

    Would love to hear your experience! Feel free to share in the comments below.

    P.S. If you need a resource to help you connect with others with rare disease, you can check out the nonprofit NORD, a great resource for rare disease patients:

    #RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome #morgellons #Syringomyelia #Neurosarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

    8 reactions 12 comments
    See full photo

    How long did it take you to get diagnosed with your rare disease?

    Living with a rare disease can mean years (and maybe even decades) of hospital visits, appointments, treatments, and procedures before receiving a proper diagnosis.

    How long did it take for you to get your rare disease diagnosis? What has that process been like for you?

    #RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome
    #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome
    #morgellons #Syringomyelia #Neurosarcoidosis #Sarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

    2 reactions 21 comments
    See full photo

    Be Gentle With Yourself #BehcetsDisease #Erythromelalgia #RaynaudsPhenomenon #AutoimmuneDisease

    “Be gentle with yourself” is my new motto. I have been battling several autoimmune diseases for over a decade now. I was always the type of person that never stopped moving, always busy. When I started to become really ill six years ago with Behçet’s, my world was turned upside down. I could no longer do all of the things I used to do and started to feel extremely guilty. Daily mundane tasks, like cleaning, became virtually impossible for me to do.
    For years, as my health declined, so did my mental health. I became depressed and I always felt like I was being judged by those around me. Being lazy was not in my nature, but I feared that others would see me as being just that.
    On various occasions, I would push my body too hard and then would make myself sick for days afterwards.
    Eventually, I came to realize that in order to justify my illness, I was making myself sicker.
    Now, I listen to my body. When I am not feeling well, I rest. When my body tells me “no more,” I stop. I have learned that taking care of myself is essential if I want to have any semblance of a life. For those of us who are chronically ill, we have to learn that putting ourselves first is not selfish, but a necessity. So remember: be gentle with yourself and take care of you. You are worth it. ❤️

    1 reaction 10 comments
    See full photo

    What frustrates you most about living with a rare disease?

    It's a no-brainer that living with a rare condition can be super challenging and frustrating at that. What about your rare condition do you find most frustrating? What do you wish people understood more about living with a rare disease?

    Let me know in the comments below 💌

    #RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #MightyTogether #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome
    #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome
    #morgellons #Syringomyelia #Neurosarcoidosis #Sarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

    11 reactions 21 comments